Ehlers-Danlos Syndrome (EDS)

What is it?

Arthritis is a complex family of musculoskeletal disorders consisting of more than 100 different diseases or conditions that destroy joints, bones, muscles, cartilage and other connective tissues, hampering or halting physical movement. Ehlers-Danlos syndromes (EDS) are a collection of genetic disorders that affect connective tissue. People who have EDS have problems with their collagen, a protein that adds strength and elasticity to connective tissue. This faulty collagen affects many body parts, including skin, muscles and ligaments. Each individual disorder in the collection of syndromes has a different set of symptoms. Treatment of EDS focuses on preventing damage to fragile body parts.

What are the effects?

Because EDS is a collection of genetic disorder, symptoms can vary dependent on which type you have. There are a couple of symptoms that are more common as they are shared among the different disorders:

  • Joint hypermobility or loose joints
  • Skin manifestations such as hyperextensibility (excessively stretchy skin) or bruising

How is it diagnosed?

Many different doctors can diagnose Ehlers-Danlos syndrome. Your family physician or pediatrician would be the logical first step toward gaining a diagnosis. In addition, you may also work with other specialists in your diagnosis and treatment:

  • Dermatologist: specialist in skin diseases
  • Rheumatologist: specialist in rheumatic diseases
  • Orthopedist: specialist in diseases and injuries of bones, joints and muscles
  • Medical geneticist: specialist in inherited disorders

To determine whether you have one of the Ehlers-Danlos syndromes and to figure out which type you have, your doctor will review your family and medical history, complete a physical exam and complete laboratory tests.

What are the treatment options?

The main focus of treatment for the Ehlers-Danlos syndromes (EDS) is prevention of injury and complications. A well-balanced treatment plan may include:

  • Exercise
  • Joint protection
  • Injury avoidance
  • Eye exams
  • Sun protection
  • Surgery

What resources are available?

The Arthritis Foundation leads the way in helping people with arthritis live better today and create better tomorrows through new treatments, better access and, ultimately, cures. We do this by:

  • Funding life-changing research that has restored mobility in patients for more than six decades
  • Fighting for health care policies that improve the lives of the millions of Americans with arthritis
  • Partnering with families to provide empowering programs and information

If you are diagnosed with ehlers-danlos syndrome, some Arthritis Foundation resources that may help you better manage and live with your disease are: